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Everything posted by rubydoo

  1. Hi Simon, Tight skin has been a significant symptom for me, particularly affecting my face, around my mouth and on my hands - resulting in lovely fat sausages where I once had fingers. Aah, how I miss those fingers and being able to fasten buttons or pick up coins. My sewing days are over, oh wait a minute, I hated sewing anyway, just trying to get a bit of sympathy. It is a really tricky one to answer, Simon, as while I can't say there has been any improvement in how tight my skin now is, it has not got any worse for the last 4 years perhaps. So, does this mean the the Mycophenolate has stabilised the skin or would this have happened anyway? The only way of knowing for sure would be to stop taking the Mycophenolate and see what happens. Obviously I am very reluctant to do this as I don't want either my lungs or my skin to get any worse, My consultant has told me several times that people can just suddenly have spontaneous softening of the skin, so you never know! For my digital ulcers I had Iloprost infusions every 3 months, which again, I find it difficult to say how much it helped or not. It never cured the ulcers and my Raynaud's was always ever present, but I didn't develop any new one. So the only way of knowing again how useful the drug was would have been to stop having the infusions. As a sufferer yourself, knowing how painful digital ulcers can be I did not want to chance it. Once the drug Bosentan became cheaper to prescribe and my consultant was allowed to prescribe it without having to apply for the funding I have been taking this and stopped the Iloprost. My ulcers remain the same, no better, no worse. I am not sure how helpful any of my post will be to you, all I can say is you have nothing to lose by trying the various treatments on offer, just don't expect miracles. Probably the best thing all us affected by Scleroderma can do is to keep a positive attitude and carry on smiling. Anyway enough rambling for, I wish you well and hope that you find a treatment that helps. Happy Holidays to everyone, Helen.
  2. Hi Simon, I too underwent the 6 month course of cyclophosphamide treatment approximately 6 years, not long after being diagnosed with diffuse systemic sclerosis. I was also prescribed Mycophenolate for my other symptoms, particularly my very tight skin and had 3 monthly Iloprost infusions for my severe Raynauds. My TCLO function dropped from 57% to 45% and it has hovered around the mid 40s ever since. My consultant says that my lung function is stable so I don't worry about it and the hospital keep a close eye on things. I hope that things improve for you and as Jo demonstrates different people respond differently to certain medications. Good Luck, Helen
  3. Hi Pinetree, So sorry to hear you have had to endure another operation, you're having quite a rough time. Really hope things improve although this may be a slow process. Patience is an absolute necessity for us in the scleroderma club. Amanda I so know what you mean about wanting your medical team to be wonderful. I used to feel this weird need to almost be able to brag to family and friends "oh yes darling. My consultant is absolutely blooming marvellous". Just read your blog the nurse and the cannula - hilarious. It sounds like patience and restraint were required at the time. Take care folks Helen
  4. Hi Evelynet, I have been taking mycophenolate mofetil for nearly 6 years as I have lung involvement from the scleroderma. I think that I can say now after this length of time that the mycophenolate is helping. I have had 2 short breaks in treatment and during both these periods my skin definitely got tighter and I just started to feel that awful fatigue again. I am not saying my symptoms have improved significantly, my lung function has deteriorated, but I know that I definitely feel worse without it. If you decide to give it a try you can, of course, stop it at any time. Good luck whatever you decide. :) Regards, Helen.
  5. Hi Pinetree, I have come to this conversation a little late in the day but thought I would share my recent experience with you in case it helps in any way. I also suffer from severe Raynaud's for which I am treated with 3 monthly iloprost infusions as oral meds don't help in my case. Anyway, I still get digital ulcers in the winter months but do all the usual stuff recommended to look after my fingers. 12 months one of my ulcers got infected and I had some oral antibiotics which did not improve things, but my general practitioner prescribed another weeks treatment. After a few days the pain was so indescribable that I got an emergency appointment with my hospital consultant the next day. She immediately admitted me for I.V pain medication, iloprost and I.V. antibiotics. I was assessed by the plastic surgeons twice and fortunately they acted cautiously. After 6 days days of treatment things had improved dramatically, still painful but nothing compared to previously. At the end of last November I could just tell that my finger ulcer was starting with an infection again, so wasted no time in going to the general practitioner and more or less told them that I needed antibiotics. (Oh how scleroderma has improved my confidence and assertiveness). Also I had another iloprost infusion over 3 days and so avoided the awful prospect of that terrible pain again and the potential of losing my fingertip. I will follow this plan of action every time now if I feel there there is any risk to my fingers. I know iloprost is not for everyone but it improves my quality of life immeasurably. I am also firmly in Amanda's camp, where there is no need to suffer unnecessarily, so if you need pain relief then make sure you get it. I hope you continue to make a speedy recovery. Take care, Helen
  6. Hi Dorothymay I under went the same treatment of 6 IV cyclophosphamide infusions but mine was over a 6 month period. The only side effect that I experienced was fatigue for a couple of days after the infusion. As I was still working at this time I had the treatment on a Friday and had the weekend to recover. I didn't miss one day of work throughout the whole thing. Unfortunately for me the treatment did not help my lung function, in fact my TLCO dropped from 57% to 46% afterwards but has been stable since then. Even so, I am glad I had the treatment as I was prepared, at the time, to give anything a try that might help to improve my lung function. Hope this is of some use to you, if only to let you know that treatment with cyclophosphamide doesn't mean that your life needs to be on hold at all, in fact nobody believed me when I told them I was having "chemotherapy" as I managed to carry on as normal. Hope your treatment goes well and let us know how you are getting on Regards Helen
  7. Hi Louise I think that it is just not recommended more often than every 3 months because of potential side effects but not really sure. I get mine on the 3 monthly basis because that is how often I see my specialist - very convenient. I feel that because my fingers are so improved that I don't want to know how they would be if I didn't have the iloprost as regularly, if you see what I mean, and my consultant agrees with this, thankfully.
  8. Hi Louise, Poor you, its not easy having to put up with painful fingertips. I also have had very painful ulcers on my fingers due to severe Raynauds. I have had a multitude of treatments for this. Initially I was prescribed nifedipine and took quite a large dose of this - 20mg three times a day. I also commenced iloprost infusions every 3 months and was also prescribed fluoxetine by my rheumatologist. Around 18 months ago I stopped taking the nifedipine. as I was experiencing some unpleasant side effects, but continued with the iloprost and the fluoxetine. It took at least a year for there to be any significant improvement but I am so glad that I persevered with the iloprost because now my fingers are the best they have been for years. I still get attacks of the Raynauds every day but my fingers do not break down like they used to. Two of my fingers have permanent sores on them but they are nowhere near as painful as they used to be. Some people are unable to tolerate the iloprost infusions, as I am sure they will tell you, but I have only suffered the odd mild headache. My care team are, however, fantastic and will adjust the speed of the infusion to suit me. I have it over a 24 hour period, causing minimum disruption to family life. It's pretty much trial and error, I think, trying to find a treatment that works for you and that doesn't cause you side effects that are intolerable. Good luck with whatever treatment you decide to try as I know how fed up and desperate I felt at times when my ulcers were really bad. WARM wishes, Helen
  9. Hi Winnie I retired earlier this year from the NHS and I imagine that teaching has similar retirement policies as as nursing. Buttons has given you excellent advice when she says that you need to show that "all avenues of treatment have been explored". It is also brilliant that you had an assessment by Access To Work and despite their recommendations having been implemented you are still struggling to commit yourself to working 3 days a week. My direct line manager, who was incredibly helpful and understanding, used both of these issues to support my application for ill health retirement. I also obtained a very detailed report from my Occupational Health doctor, had the support of my general practitioner and my consultant rheumatologist. Also I had been off work at this time for several weeks due to having had gallstones removed (not related to the sclerosis). I was able to demonstrate how my physical health had improved during this time away from work, partly due to the significantly reduced amount of stress experienced by not having to go work. I was advised to expect an initial refusal of ill health retirement simply because of the government cutbacks and should expect to have to appeal. However, this proved not to be the case and the whole process took just over 3 months (luckily for me my retirement date was given just as my full sick pay was due to end). Getting the actual lump sum and monthly pension payment started and paid into my bank account - well now, thats a completely different story............. Good luck and hope you get what you want and so rightly deserve Helen
  10. Hi Jacqueline, I had 6 months of I.V. cyclophosphamide a couple of years ago. I suffered no side effects whatsoever and was very well looked after and made very comfortable throughout the procedures. The anticipation of the treatment is much worse than the real thing so try not to worry too much about it. I found that I could carry on as normal and never missed a days work because of it. Good luck and let us know how you get on. Take care, Helen
  11. rubydoo

    Hair Loss

    Dear Sandy, If I was you I would treat myself to a glorious Marilyn Monroe type wig and pose for the cameras. Hope you have a good weekend and the sun shines on your B-B-Q. Take care, Helen
  12. Hi Amanda, I have had both procedures done and was never told to stop my omeprazole. If gaviscon doesn't help ask hubby to get you some gaviscon advance. I don't know why but in the dim and distant past, pre scleroderma, I had crippling heartburn when I was pregnant. Gaviscon was useless but for some weird reason gaviscon advance worked a treat. It's worth a try anyway. Good luck with the 'oscopies and hope the results come back okay. Take care, Helen.
  13. rubydoo


    Hi Clare Yes I don't think you're the only one that had many symptoms before diagnosis but just didn't put two and two together; as Amanda says so many totally unrelated symptoms it's not surprising really. I hope that the insoles give you some relief, anything's worth a try in my opinion. I know several people who do as little ironing as they can get away with but I just can't help feeling like a bad mother if I don't iron the children's clothes. Totally stupid I realise but that's the way it is Good Luck Helen
  14. Dear Sandy I don't believe that I have ever communicated with before now and I am so sorry it is under such difficult circumstances. I hope that you get the opportunities to say everything that you need to to all those who are closest to you whilst you are still able to. Remember that you are not on your final journey alone so surround yourself with the people who matter most to you. My thoughts will be with fondest wishes Helen
  15. rubydoo


    Hi Amanda I totally agree that it is quality not quantity and based on this I think I will give anti-inflammatories a try (if I can get general practitioner to prescribe). By the way my rats, Buzz and Woody, are highly offended that you think they are gross. I will upload a picture for you to shriek at when I can work out how to do it. Actually I was bullied into getting them by my kids, we have only had them a few days and I hate the smell already. Oh well, at least they don't snuggle with me at nap time! I will let you know regarding the anti inflammatories. Take care Helen
  16. rubydoo


    Hi Amanda and Judy , I think I will speak with my rheumatologist at my next appointment about taking anti-inflammatories. My past experience with taking them has proved they are effective for me. I even took some Voltaren (diclofenac) once that was 3 years out of date (I only discovered this after I had taken them) but they worked like magic for my bad back! I am not recommending anyone else does this (LOL) by the way. My wonderful friend has been doing some ironing for me, but having just arrived back from 2 weeks in Crete you can imagine how much washing and ironing we accumulated - I want to KEEP her as a friend so will brave the pain (oh woe is me) and just get on with it. Love Helen
  17. rubydoo


    Hi Clare sorry you are suffering with tendonitis. I can completely sympathise with you as I have been suffering for the last 3 months and have been told it can take up to 2 years to get better. The pain has been excruciating at times, particularly first thing in the morning as I just can't help laying on my side whilst sleeping. I have had weekly physiotherapy and a course of acupuncture with no success. She recommended an elbow support at first but this just made things worse. She also advised completely resting my arm. I just looked blankly at her and then wondered what planet she lived on! (Single mother of 4 children). I didn't realise that tendonitis can be a symptom of scleroderma - my general practitioner never mentioned it and neither did the physiotherapist. I wanted to try anti-inflammatories but my rheumatologist is dead set against them for scleroderma sufferers. So I have been taking paracetamol and pain medication when I need it but again I have not found much relief from this regime. I think I just have to accept the fact that it is going to take a long time before I see an improvement. In the grand scheme of things it is not a serious health problem but it certainly impacts significantly on your day-to-day activities. I tried to bribe my teenage sons to do the ironing but it was so stressful watching them this only lasted a day. Hope you find some relief soon Regards Helen
  18. Hi Jad12 I have been drinking decaff. tea for years. There are lots of different brands and they are just the same as their ordinary T-bags. Anyone who says they can tell the difference is fibbing as I always give visitors decaff. and no-one has noticed yet. Just make it the way you would any ordinary tea; I have milk in mine. Enjoy Helen
  19. Hi Amanda I think that you are very brave for stopping your mycophenolate. I take the same drug and the only symptom I would say has improved significantly in the last 2 1/2 years is the overwhelming fatigue that I used to experience. My skin is getting tighter and tighter, my mouth is now tiny, my lung function has dropped down to 46% (despite having had chemo as well). I would just worry that my symptoms would deteriorate without the immunosuppressant. I wish you lots of luck with it and keep us uptodate with how it goes for you. Take care. Helen
  20. Hi Amanda Of course the main consideration for early retirement is your health but I so agree that in this day and age we are very lucky to have some financial security from our occupational pension. Who knows what age we will be when we get our state pension! Helen
  21. Hi Jad12 I don't post very often but read your post with interest as I too describe my fingers as swollen sausages. I have recently been suffering with very stiff painful joints, particularly my elbows - excruciating some days and even picking up a cup of tea hurts. I was previously on the NSAID Naproxen, prescribed by my general practitioner. This was working very well on my joint pain, however when my rheumatologist found out I was taking them she stopped them immediately,even though I take esomeprazole twice a day. She says that the risk of getting strictures in the oesophagous is almost a certainty for scleroderma sufferers if they take anti-inflammatories. What do other people find helpful for their joint pains as it is now beginning to restrict my daily activities - can't do ironing, cleaning windows, etc (no bad thing I hear you all saying, LOL) and I have stopped going to the gym. I tried an elbow support given to me the physio but this just made the pain worse. When I was first diagnosed, 2 and half years ago, I also was feeling pretty much like you are now, especially since I also have lung involvement. Eventually you find your own way of coping with it and if your medics are as supportive and caring as mine have been then all the better. It also helps to use these forums even if you only view other posts. By the way you still LOOK weird in the dark but nobody can see you Take care and keep posting Helen
  22. Hi everyone out there in scleroderma land, Haven't posted for a while as been having technical problems with laptop which have now been resolved. I am very pleased to say that I have now been officially retired from NHS on grounds of ill health. YEAH me. It is such a relief as I have struggled and juggled for a long time working 30 hours a week, looking after 4 children on my own and battling with lung, joint, muscle, stomach and skin probs plus overwhelming fatigue. I know that others have had to really fight for their retirement but it has been a very simple and straightforward process for me thankfully. My managers have been incredibly supportive. Now I just have to get used to calling myself a "retired nurse" and look forward to planning the rest of my life. Got along "to do" list some of which will be easy and some a little trickier, but as they, say where there's a will there's a way. First on to do list is champagne cocktails with best mate tonight and then book holiday some hot and relaxing with kids, Yippee! Warm wishes to everyone Helen
  23. Hi Kei Kei why don't you ask your specialist if you can have the iloprost infusion. I have had 7 infusions, each over 24 hours - the last one. being yesterday. My fingers are the best they have been for over 2 years and the digital ulcers have practically disappeared. My consultant says that I can get enough of the iloprost over the continous 24 hour period to make it effective- it has been very effective for me and means I don't have spend 5 tedious days in hospital hope it works as well for you as it has for me regards Helen
  24. Hi Jo69 I agree with the advice already given that you must insist on a referral to a scleroderma expert. My diagnosis literally took a matter of 6 weeks from my first consultation with a specialist - my blood tests proved positive for Scl70. I had various symptoms very similar to yours for probably around 4 years before I did anything about it and the damage to my lungs had already been done by then, so my advice to anyone with any worries about there health is to insist on getting a specialist opinion as there is nothing to lose but such a lot to gain. I really hope that you don't have scleroderma but it is better to know for sure regards Helen
  25. Dear Fragiledancer, I can totally sympathise with you about the digital ulcers as I suffered for 2 years with very troublesome ulcers on 2 of my fingers. They also got to the point where they were always covered with greenish skin. Now, however,for the first time in 2 years my ulcers are almost completely healed over and the pain is minimal. I'm hoping too that my Raynaud's is deciding to decamp and move on like JudyT's. It has not gone yet but doesn't visit that often anymore and the attacks are relatively mild compared to last winter. My treatment started with Nifedipine 20mg x3 daily but I found this hard to tolerate and it wasn't improving the situation anyway so it was reduced and I now take 20mg in the morning and 10mg in the evening. I have had 5 Iloprost infusions over the last 21 months which initially didn't seem to improve things. My Rheumatologist also started me on Fluoxetine 20mg daily in February of this year as I was really suffering with the ulcers at this point - this has vasodilation effects and has been shown to work for some people with Raynaud's. Whatever, whether it's just my time for the Raynaud's to improve of it's own will or whether it's the current combination drugs I am taking it's impossible to say. I am not stopping the treatment yet anyway to find out as I am making the most of not feeling as though I live in a fridge. Anyway, I guess what I am saying is there is always hope that you can find something that works for you 'cos I never thought I would. Really hope you find some relief soon. By the way I worked for years as a nurse caring for very frail elderly patients. When all else failed on their ulcerated very fragile skin we used honey dressings quite successfully in most cases to heal them. Take care and warmest wishes, Helen
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